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 intro from a southern gal 
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Joined: Thu Dec 08, 2011 5:23 pm
Posts: 14
Post intro from a southern gal
Hi all - I have no idea if I'm in the right place. Couldn't figure out how to post an introduction. Not only am I new to the forum, I'm new to computers and very "un-techy." Please correct me if I'm not where I'm supposed to be. My name is Diana, only child, health issues including degenerative disk disease, diabetes and bi-polar. I feel older than dirt. Mom, 83, was diagnosed in 2007 but, we know now, had symptoms as early as 2005. She was put on Aricept. All of 2007 was awful - hallucinations and violent nightmares (my dad was still living and had to deal with that). During the day I had two moms - my "real" mom who loved us and my Lewy mom who didn't like either one of us very much. She was paranoid that we were plotting against her, and she lost her sense of humor which was unfortunate for Dad because he had been joking around with her for 60 years and didn't know how to stop. Like Forrest Gump's box of chocolates, we never knew what (or who) we were going to get because she changed back and forth constantly. Speech and cognition problems, belligerent, refused to return to geriatric specialist after initial diagnosis (she hated the mental exams). For some reason, at the end of Jan. 2008, my real Mom returned for the most part. She still had the night-time issues, but during the day she was like her old self - laughing, talking, engaged and interested in everything, loving, eyes sparkling. I could almost forget she was ill. A few months later, Dad was diagnosed with stage 3b lung cancer, tumor the size of baseball on right lung. The next 15 months I shuttled him back and forth to chemo - not for a cure but for comfort - to reduce the tumor so he could breathe. I didn't have to worry about leaving Mom alone all that time and she was her old self the whole 15 months. Might have been the Aricept (does it take that long to work?), but I look on it as a gift from God and a tremendous blessing. After his death, she stayed in their senior apartment for a while, with my help, but trying to make an already long story shorter, she is now in ALF, still real mom in some ways (not hateful) but Lewy Mom in many other ways. Lack of communication is the saddest and most frustrating thing of all for both us. She works so hard trying to tell me things, we both end up in tears most of the time. Thanks for being here although I wish none of us were.


Thu Dec 08, 2011 9:40 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: intro from a southern gal
Welcome, and I'd say yes, you are certainly in the right place. We are a group of CGs who all have or have had LOs with LBD or possibly LBD and other neurological disorders. There's a lot of support and info. here, so stop in often. This forum was a life saver for me when I was trying to do the CGing and all the other tasks for several years when my dad was so ill. Take care, Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Dec 08, 2011 9:47 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: intro from a southern gal
Welcome to the forum! So very sorry it's necessary for you to be here but very glad you found us. God bless you for all you have done and are doing for your parents!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Dec 08, 2011 9:50 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: intro from a southern gal
Hi:

I haven't been on this list all that long but in the time that I have been reading and asking and posting - I have found the most amazing folks who are sharing important information and experiences with me. We have only had my mother's DLB diagnosis since the spring and already I have learned a lot about this awful disease. I have gained so many insights from the wonderful care givers on this list. Welcome

Liz


Thu Dec 08, 2011 10:12 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: intro from a southern gal
You figured out how to post an introduction!

My brother also found the lack of communication to be the saddest symptom as he no longer had access to dad's personality and thinking.

You are doing the best you can, and that's all anyone could ask. Just keeping giving your mom love and attention, and you'll make it through another day.


Thu Dec 08, 2011 11:46 pm
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Joined: Thu Dec 08, 2011 5:23 pm
Posts: 14
Post Re: intro from a southern gal
Thanks for the welcome. I didn't want to make my introduction post too long, but I'll add now that when Mom was first diagnosed, I did find this forum. I didn't have Internet at home so I read it at my husband's workplace whenever I had a chance (we had permission to use the computer after hours). It helped me tremendously with so many things - kept me from being surprised and freaked out about new symptoms, gave me a heads up about certain meds, and helped me be able to ask more intelligent questions when we went to the doctor. I haven't been reading the forum all this time, just in 2007 mostly. I've noticed since I began reading again that some of the familiar names from that time are gone (I do remember Irene and Robin) and sadly, many new ones are here. Love to all...
Diana


Sat Dec 10, 2011 2:08 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: intro from a southern gal
You've been around this community for a long-time, then. Lots of wonderful folks from those days have left the Forum. Some are still in touch -- like EricSEA. Many have moved on to wonderful things post-caregiving.

And, as you say, sad that there are new ones.


Sat Dec 10, 2011 2:33 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 191
Location: Portland, Or
Post Re: intro from a southern gal
Welcome Diana, I hope you find the same knowledge and caring that I've experienced on these forums. This disease is so difficult because not everybody has all the same symptoms, but usually somebody has been through what you're dealing with at some time. It helps to know that someone else understands what we're going through.
Ellen

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Ellen 59, caregiver for mom Marion 82, dx LBD Feb 2011


Sat Dec 10, 2011 1:23 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: intro from a southern gal
Diana,
Welcome to the LBDA forums, your in the right spot and when posting in the future it helps to post in an area that best meets your question or comment, lots of caring people still here but yes many have moved on.

_________________
Irene Selak


Sun Dec 11, 2011 7:45 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: intro from a southern gal
Welcome, Diana, from another southern gal. My husband was diagnosed in 2007, too.
Remember to take care of yourself along the way.
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun Dec 11, 2011 9:27 pm
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